It’s our movement. Let’s take it back.

change ii

The last few days have seen mixed emotions as the new Government takes power in Canberra. The victors are jubilant while others are angry or confused.

Yet what is beyond doubt is that we are a democracy.

We choose our leaders and hold them to account. If they get arrogant or lazy we ditch them.

Democracy can throw up moments which crystallise the public mood in those moments. The defeat of a candidate who didn’t know his own policy in Greenway, the disendorsement of a bully in Hotham and that result everyone’s talking about in Indi.

In Syria we see the results of a voiceless people as a government lobs poison at its own. Australia is lucky that we employ the government.

And all across Australia in civil society – in the clubs, the AMA, ACOSS, the NRMA, business councils, trade unions, professional associations, local councils, farmers groups, state and territory parliaments and in sporting codes – people can join, vote and elect those who they want to represent them.

Even the ALP is moving its leadership contests out of the shadows.

And yet somehow in disability, where we most need a voice of our own, it’s all gone wrong. Almost everyone can vote for who represents them except people with disability ourselves:

• Service providers can join and vote for a funded organisation, National Disability Services, which represents them;

• Disability support workers can vote for organisers in unions; and

• Carers can vote for Board members in a funded organisation which represents them.

For us, the Australian Federation of Disability Organisations is the body officially recognised as “the primary national voice to Government that fully represents the interests of all people with disability across Australia”. You heard it right. “Primary voice”. “Fully represents”. “All people”.

It’s got some good hard working people in it. Genuine people. People I respect.

But ordinary people with disability cannot stand for or directly vote for its board or decide who leads. Alone, out of all the business groups, trades, professions, movements, unions and causes, people with disabilities have no way of directly electing the leaders of the body that government appointed to represent us.

That’s not right, it’s not fair, it’s paternalism and worst of all it’s not working. Even the organisational members of AFDO are voting with their feet. Some people haven’t even heard of it.

This movement belongs to us and it’s time we took it back with a directly elected professional peak body recognised by government that’s accountable to all of us. That holds power at the will of us, not imposed by government. That anyone with a disability can join, vote for and participate in. That’s high profile and known.

We need a body capable of harnessing the voice we now hold in the public square. That can grasp the momentum and goodwill we have following the introduction of the NDIS and make us run, wheel and shuffle like mad towards our future.

This is our moment. We have become the 98% yet we still behave like we’re in the attic with the 2%.

But it doesn’t have to be like this. We dominated the public square for an entire year in 1981, got wheelchair taxi subsidies and a PADP scheme, stopped a major airline from discriminating against us, made entire towns and cities change planning, freed people from institutions, shook up the ABC and wrote a Disability Discrimination Act.

We were able to be all these things and do all these things because people stepped up. Leaders who are known and revered. Like Joan Hume, Graeme Innes, John Moxon, Sue Salthouse, Ian Cooper, Christopher Newell, Robert Farley, Hazel Freed and Annie McDonald.

Yet somehow we never took the next step. We never found a democratic culture. Is it any wonder we have so few people with disability in the Parliament? And where are our Ministers for disability with a disability?

Why aren’t the peaks a pathway for people to get into politics as they are for women, for unionists, for business?

This last week saw a group of advocates come together in Canberra to discuss where it’s going wrong and how to fix it. These were exhausting discussions amongst people of goodwill trapped inside structures shaped by history rather than choice.

Much of the two days was about what government might do to us, for us or be saying about us.

Instead of talking about what others do, it’s time we took the steering wheel.

All week I heard people frustrated by our lack of unity. They were right. Yet some also said that change is impossible. They were wrong.

Some believe we have difference that can’t be solved. That we are defined solely by our disability rather than our life stories, our genders, our common barriers and a lack of access to jobs, housing, relationships and resources within a world that withholds it’s respect.

And there is no denying some truths in all of this and it seems hard. Exhausting.

But in throes of despair, I see the awesome stuff we CAN still do. And none of it has anything to do with what some doctor diagnosed us with.

The campaign about Myer. The Divas busting a gut to develop a book of punchy stories in a single day to bring to Premiers at COAG. The people who let MP’s into their kitchens and told their stories yet again. Those who told harrowing truths to the Productivity Commission knowing they would be repeated around the country.

The gutsy YDAS team who stopped trams in the centre of Melbourne at peak hour and the bloggers like Carly Findlay who rewrite the ableist narrative of the world one post at a time.

The whirl of wonder that is Stella Young and ABC Ramp Up that’s opened up a conversation in our community and got disability out of the box and onto Q&A.

Starecase magazine – dreamed out of nothing, done for free by people with no time.

If we can do all these things then YES we can control our voice if we decide to.

One that’s filled with muscle and shows we can represent ourselves. A tuned up engine for change that is:

• modern, sharp as a tack and pushing out with social media, crowdfunding and the 24 hour opinion cycle;

• gutsy and never accepts comfortable mediocrity, ineffectual advocacy or tea and sympathy;

• democratic, muscular and able to attract the sharpest voices. Voices with ambition – fighting to be part of what we are making who will wind up in Federal Parliament;

• respected and setting a high tone through probity, integrity and honesty; • able to speak with one voice on great public issues that need weight of numbers yet champion voices of others in their own fields, especially campaigners for women, Deaf Australians, blind citizens and youth who blaze a trail for all of us; and

• inclusive enough to allow the unfiltered voices of people with intellectual disability to come through, along the lines of People First in NZ or the Our Voice initiative.

If you want change, if you support a better voice for disability, if you have ideas or just want to discuss – then join facebook.com/wewantchangedisability

In one week 300 people have joined our conversation about a directly elected national peak body for people with disability in Australia, recognised by Government and accountable to all of us.

There are millions of us and nothing can stand in the way of our voice unless we let it.

Craig Wallace

Craig Wallace is a marketing manager and project coordinator with Nican a national community organisation and has been a community leader with various organisations for more than a decade. He is the President of People with Disability Australia, a leading cross disability rights organisation in Australia and is a member of the ACT BLITS business group.